News

U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating  diagnoses, and improving patient care and treatment, is now in practice. This  framework, signed by all four countries take make up the U.K. — England, Scotland, Wales and Northern Ireland — builds on the success…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

The Ehlers-Danlos Society has several scholarship grants available for those who wish to attend its Virtual Summer Conference 2021, or the accompanying series of one-day meetings, and without aid may not be able to do so. The conference is set for June 26–27, and the five single-day events…

The Ehlers-Danlos Society is planning a series of virtual events that start in January and are intended to gather experts, people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), their families and caregivers. As inclusive events, organizations and the general public also are invited to join.

The Ehlers-Danlos Society is now accepting applications for the second round of two grant programs intended to support research projects focused on Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). HSD comprises a group of medical conditions associated with joint hypermobility. These disorders are usually diagnosed once all…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

People with Ehlers-Danlos syndrome (EDS) have significantly greater stiffness of their blood arteries — a known risk factor for cardiovascular disease — than their healthy peers, a Swiss study shows. While vascular EDS (vEDS) was associated with the highest arterial stiffness among the different EDS types, these differences did not…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…